Notes from Joe, November 2021

Notes from Joe

Show Me The Data!
by Joe Pugliese

As you know, we’ve been working the last few months on production of the DDAVP NS, and I’m excited to share that the second lot was just produced on November 5, and it will have 6 months of dating from the date of manufacture. We’re also making progress on state licensure and expect more states to come online shortly (see map here). We have enjoyed good success with getting payers to reimburse for the product. We still have a ways to go, but our story of ease of use and accessibility coupled with lower costs and great effectiveness for patients is a compelling story. If you have questions or need assistance in getting an insurer to reimburse for the product, please reach out to Jeff Blake –

As we’ve been working on all of this over the past several months, it became very clear that we needed more data about how big the need was for DDAVP NS. Why is this important? Virtually everyone wants data. In this case, manufacturers want it so they can assess whether they should invest in developing a product. Insurers want to understand how cost effective a particular therapy is. Patients, manufacturers and healthcare providers want to understand how to continuously improve therapies and improve quality of life. The only way to do that is to collect data.

Collecting data is a big business and many private companies have developed infusion logs and worked hard at selling patients and providers on populating their platforms with all manner of data. My concern with this model is that many are private companies, who are looking to build databases that could be sold to the highest bidder – potentially limiting access to and use of that data by the community.

The good news is that we already have an in-house, bleeding disorders community solution to collecting data: ATHN. A 501(c)(3), the ATHN Board is made up of some of the best and brightest clinicians in our community, as well as our federal partners at the NIH, CDC and HRSA. The need for data as well as the need for the data to be used responsibly is only going to become more important. (See article later in the Newsletter on gene therapy)

ATHN has answered the call from the blood disorders community to develop a new tool that enables real-time information sharing from patients and caregivers to the HTC staff. ATHN partnered with four HTCs, the Center for Inherited Blood Disorders, Hemophilia and Thrombosis Center – University of Colorado Anschutz Medical Campus, Newark Beth Israel Medical Center – Children’s Hospital of New Jersey, Indiana Hemophilia Treatment Center, to develop the new Robust Health mobile application.
Robust Health provides a seamless and engaging experience for persons to track treatments, bleeds, Patient Reported Outcome (PRO) measures, and goals. Robust Health also provides users with the ability to visualize their information with interactive views and features two-way text messaging. Users can enable two-way communication between themselves and their HTC via the application.

Robust Health is currently in early release use at the four development partner HTCs through the end of the year. If you are interested in using Robust Health before January 2022, please contact ATHN Support. For more information about Robust Health, visit or contact

Also in this Issue…

Legal Update
· 340B Litigation Update: Once more unto the breach, dear friends, once more

Payer Update
· Hemophilia Alliance Network Services (HANS) Update

Alliance Update
· Update on the Alliance HTC Growth Initiative
· 2022 Spring Alliance Members Meeting Schedule

Notes from the Community
· Monitoring the Impact of Gene Therapy in Persons with Hemophilia

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